Elbha  O’Sullivan writes about the publication this week of Tiny Footprints and the work of  Irish Premature Babies and her own experience of premature birth.

In October 2010 I was 6 months pregnant, just at that stage where I was beginning to daydream about buggies, nursery colours and all the cuddles I’d have with my baby when she or he was born in January. I’d had a niggling pain for a couple of weeks and on October 4th, at 26+4 weeks gestation, I went to my GP. Within a few hours I was admitted to hospital on complete bed rest and advised I would have my baby within 3 days. I was suffering from pre-eclampsia, a serious illness of the placenta which affects the mother’s organs and the baby’s growth. The hospital prepared my husband and me for the imminent arrival of a very small, sick baby by showing us the neonatal ward in which the baby would be cared for after birth. We also met with a neonatologist, who explained everything to us – from how our baby would likely need to be ventilated after birth, to the mortality rates for our baby. We were lucky and I managed to stay well until 29+6 weeks gestation. I then developed HELLP syndrome and my daughter had to be delivered by emergency caesarean section. Éadaoin was born weighing 2lbs 6oz / 1.07kg and rushed off to the NICU (neonatal intensive care unit). My husband went to see her a few hours later; it was 24 hours before I saw her for the first time and 10 days before I held her.

Then began a journey I could not have imagined a few short weeks earlier. Éadaoin was in an incubator, as she was too small to keep herself warm. Too young to have a suck, she was fed by a tube, first through her navel and later through her nose and then mouth. Each morning we met with her doctors, who explained the issues affecting her and her chances of survival. Displaying the fighting spirit for which premature babies are renowned, Éadaoin grew strong, gained weight and fought infections. She spent 6 weeks in NICU and 2 weeks in SCBU (special care baby unit), before we finally brought her home just 5 days before Christmas – at 37 weeks gestation, weighing about 5.5lbs.

Although for us, the worst of her medical issues were over, there were still many steps left on the journey of having a premature baby. Feeding is difficult, they develop differently to term babies, you need to shield them from infection and everybody seems to stare at your tiny, precious child. I realised I did not know anyone who had been through something like this. It was difficult for friends and family to offer help or advice, as this was all new to them too. While researching online during a night feed, I came across the charity Irish Premature Babies.

Premature birth is defined by the World Health Organisation (WHO) as a birth that occurs at less than 37 weeks gestation. 6% of all live births in Ireland in 2009 were premature, affecting over 4,000 babies and their families per year. Allison Molloy had her first premature baby in 2006 and her second in 2009. She found little in the way of information or support for parents when they have a premature baby in Ireland. Allison decided to address these issues by founding a support group, which she called Irish Premature Babies.

The initial concept of Irish Premature Babies was to facilitate a focal point for parents to connect with each other on social network sites like Facebook and Twitter so they would not feel so alone or isolated. Another important aim was to create a website that would provide relevant information for parents living in Ireland on topics such as rights and entitlements, where to buy premature baby clothing, feeding issues, where to get support in the community etc. This aim was achieved in 2010 by the setting up of the website www.irishprematurebabies.com.

A key feature offered by the charity, is access to support. Irish Premature Babies operate a 24 hour helpline and a “Buddy System” which provides one to one support for families. All the volunteers offer support to families new to the premature experience via email, telephone, texting or face to face chats. Evidence from a study in Mount Sinai Hospital in Toronto has shown that parents who were supported by a buddy or NICU veteran suffered less stress, anxiety and depression. Personally I found the support of Irish Premature Babies, and the parents who post on their forums, invaluable during those early months.

Irish Premature Babies has recently launched a project called “Keep parents and babies together”. This project is to provide funding for accommodation for parents whose babies are transferred from all over Ireland to Dublin. Unlike in children’s hospitals like Temple Street or Crumlin Hospital, there is no parental accommodation for parents with children in neonatal intensive care units. Parents must either find their own accommodation or stay at home. Neither scenario is fair for the parents or the baby, especially if one considers that a baby can spend months in hospital. It is also a financial hardship for many parents.

In order to help raise funding for this project, Irish Premature Babies will be launching their first book called “Tiny Footprints” later this year. It will be launched on World Prematurity Day on the 17th of November. This book tells the stories of 80 babies born prematurely in Ireland. If you would like to help Irish Premature Babies raise much needed funds to keep parents with their sick babies, you can buy a copy of the book online at http://irishprematurebabies.com

Contact details:
Website: www.irishprematurebabies.com
Email: info@irishprematurebabies.com
Queries 087-9459350
Buddy helpline 086-3458931
Twitter: @irishprems
YouTube: irishprembabies
Facebook: irish premature babies